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Living well with eczema (and all the ways to do it)

We asked a patient, medical doctor and psychologist for their best advice to conquer the daily struggles of life with atopic dermatitis.

Living well with eczema (and all the ways to do it)

For more than 3 million children and adolescents living with moderate to severe atopic dermatitis (AD)—the most common and serious type of eczema—the worst words in the English language are “don’t scratch.”

Teachers, friends and even parents may utter these words with the best of intentions, but when young patients are under the lash of relentless itch, the last thing they want to hear is to stop doing the very thing that provides momentary relief.

What’s more, a command—even a constructive one—is likely to reinforce the unwanted behavior, not prevent it, says Jennifer LeBovidge, Ph.D., a psychologist in the AD Center at Boston Children’s Hospital and a member of the Harvard Medical School faculty. “It’s a little like telling someone not to think about pink elephants.”

LeBovidge helps children, adolescents and families assemble a toolkit of strategies for dealing with the daily burden of the disease. “Sometimes you need a hammer, and sometimes you need a wrench,” she says.

That’s why it’s important to have plenty of options, LeBovidge explains. Some strategies are concrete and physical, such as taking a daily medicine or sticking to a particular skin care routine.

Others are more subtle and personal, such as practicing self-care or changing your mindset about the disease. What these strategies all have in common is that they require patients to know themselves.

5 tips from an eczema patient

Children and teens with eczema are often told that they’ll grow out of it, but Kathy Sage, like many others, never did. She also suffers from two comorbid conditions: food allergies and asthma.

“I flip-flop between these three,” she says. “When my eczema flares, my asthma is not as bad, and vice versa. The same goes for my food allergies. They tend to erupt just when my skin calms down.”

Sage’s toolkit of strategies runs the gamut from open-ended to extremely specific. In the latter category is an ointment she makes from three simple ingredients: water, an emulsifier and coconut oil. Her homemade remedy cools and calms her eczema more effectively than the over-the-counter products she has tried over the years, she says.

Sage recognizes that wellness remedies are extremely individual, and she’s under no illusion that what works for her will work for everyone. Still, she’s eager to share her top five wellness tips that apply to just about anyone seeking ways to ease their symptoms and enhance their quality of life.

  1. KNOW YOUR TRIGGERS. What triggers an itching and scratching cycle for you? How do you stop it in its tracks? Knowing your triggers is the best way to defuse them.
    Sun, heat and sweat are the main culprits for Sage. She avoids direct sunlight and always wears a hat and sunglasses. Summers in her hometown of Annapolis, Maryland, can get pretty hot, so air-conditioning tends to be her best friend during the summer months.
  2. GET REGULAR EXERCISE. Do as much as you can but know when you’ve reached your limit. Sage says her limit is right before she breaks a sweat.
  3. TRY QIGONG. Increasingly popular, this holistic Chinese modality is all about breathing, posture and slowing down the body’s out-of-control reactions to stress. Sage says she can’t recommend it highly enough.
  4. DO SOMETHING CREATIVE. Sage favors reading, cooking, sewing, pottery, origami and fiber arts, but any activity that takes you outside yourself will do, she says.
  5. FEEL FREE TO EXPLORE. Try new things, such as yoga, positive thinking and mindful meditation, and remember to breathe throughout the day. Trial and error is often the best way to figure out what works for you, according to Sage.

5 tips from a dermatologist (who’s also an eczema patient)

In sharing her best insights for living well with AD, Dr. Vivian Shi, a tenured member of the faculty of the University of Arizona College of Medicine in Tucson, relies on two sources of expertise: she’s a dermatologist whose principal focus is AD, and she’s a longtime AD sufferer herself. Like Sage, she developed the condition in childhood, and also like Sage, she never grew out of it.

Shi was born in South China, a region with high rates of pollution. Food and seasonal allergies, asthma and eczema are common there, especially in children. Her family immigrated to the U.S. when she was a teenager. “As an immigrant teen with AD, I experienced directly what it means to lack access to health care services,” she says. “Later, my experiences as a patient, combined with my desire to heal others, led me straight to medical school.”

Shi celebrates the arrival of Dupixent (dupilumab), the first biologic for people with moderate to severe AD, calling it a “godsend.” But even the most effective medications don’t guarantee patients the quality of life they seek and deserve, especially given recent research attesting to the emotional burden of AD on the daily lives of patients.

A study published in the Journal of the American Academy of Dermatology in August 2017 cited significantly higher rates of anxiety, depression and sleep disorders in people with AD compared with people who don’t have the disease.

For Shi, the new data confirms what she already knows as a patient: People need medications, but they also need to find strategies for living well. Here are her top five wellness tips for patients struggling with the disease and its impact on mood and sleep:

  1. FIND TIME FOR YOURSELF. Self-care in every form requires a little solitude. Shi makes sure she carves out as much alone time as is reasonably possible in her busy life.
  2. COMMUNICATE WITH YOUR HEALTH CARE TEAM. Be proactive. Don’t hesitate to keep your doctors, nurses and others aware of what’s working for and what isn’t. Let them know of any special circumstances that might affect your treatment. Medical professionals aren’t mind readers, Shi admits, so make sure they know what’s happening in your life.
  3. TRY A “HANDS-ON” APPROACH. Massage is one of the top wellness strategies recommended by health care providers across the board. For those living with eczema, it can be a way to work moisturizer deep into the skin, while relaxing sore or tense muscles as a form of stress reduction. Shi encourages her patients to explore an array of healing options that rely on human touch.
  4. KNOW YOUR OILS. Coconut oil is one of the most common natural oils used for moisturizing skin. Sunflower oil has healing properties as well. Look for cold-pressed virgin oils, but avoid olive oil, essential oils and aromatherapy oils, which are known to irritate the skin, Shi says.
  5. SPEAK OUT! Do your part to counter all the “fake news” and misinformation out there about eczema and AD. In a straightforward, non-confrontational way, tell your friends, teachers and co-workers that eczema isn’t contagious. The best way to change someone’s mindset is to come out of the shadows, speak up and speak out. You are your own best advocate, Shi says.

When it comes to speaking out, LeBovidge agrees with Shi: “Children might consider doing a ‘show and tell’ at school about their experiences with AD,” she suggests.
Education can be very helpful and very powerful. Families can partner with a teacher or school nurse and find interesting, engaging ways to teach students and teachers alike about the disorder,” thus cutting stigma down to size.

“And keep the language simple,” LeBovidge adds. “A simple phrase like ‘you can’t catch it’ will go far toward disarming peers and neutralizing their fears.”

5 more tips for good measure

A team approach is at the heart of LeBovidge’s clinical practice. She urges AD families to include their children as active participants in their own skin care.

For instance, parents can turn it into a game in which they and their child take turns rubbing in moisturizer. Teens can incorporate self-care into special “spa” rituals in the evening, perhaps before doing their homework and crashing for the night.

With the wealth of available conventional and complementary wellness strategies, LeBovidge hones in on her own top five:

  1. COMMIT TO A REGULAR SKIN-CARE ROUTINE. Be consistent. Your routine may vary from day to day, depending on the severity of your symptoms, but generally follow your regimen. Not only will regular skincare habits help you control the condition of your skin; they’ll help you gain a sense of control over your AD, she says.
  2. USE GUIDED IMAGERY. Take a vacation in your own mind. Imagine a pleasant scene that involves all of your senses. If you picture yourself on a beach, hear the seagulls, feel the ocean waves lapping at your feet and smell the salt air. Your body will relax as if you’re really there, she notes.
  3. ENGAGE IN A DISTRACTION ACTIVITY. Keep your hands busy. Children might enjoy drawing or building things with blocks or Legos, while older patients might choose cooking, repairing furniture or crafts. These activities can distract your brain when the itch and pain threaten to become overwhelming. They provide a competing set of sensations, thus changing your brain activity, LeBovidge explains.
    You can also block some of the itchy messages to your brain by changing your sensations. If your eczema feels hot and burning, imagine using a dial to turn down the temperature, she recommends. Even the simple act of applying a cool compress can distract your brain and produce welcome changes in your body.
  4. EXPLORE THE WORLD OF APPS. Apps tend to come and go, but relaxation and meditation apps are plentiful. All you need to do is search for them, LeBovidge says. Use them at bedtime to help you relax and sink into a good night’s sleep.
  5. DON’T SUFFER IN SILENCE. Whatever your age, your situation and the state of your skin, remember that you’re not alone.  Keep communication lines open with your friends, family and the members of your health care team, she says.

What’s in your eczema toolkit?

It bears repeating that anxiety and depression are prevalent among people with AD, and young patients are especially vulnerable. “It’s obvious that AD takes an emotional toll, but stress also appears to exacerbate the condition,” says LeBovidge. If a child is feeling down, she strongly urges you to bring it to the attention of your family physician.

Wellness takes practice, and while practice doesn’t always make perfect, it will get easier over time. Start by putting together your own wellness toolkit. Build the quality of life you want and need, one day at a time.

When you need extra support…

There are many ways that the National Eczema Association can help you in your wellness journey.

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